Thursday, August 14, 2014

All my words.

We got a notice in the mail saying we hadn't made our house payment. Well, that's insane because we have an automatic payment thing because our home loan is at the bank where we have our accounts. A few years ago, there was a similar problem but it turned out to be a computer thing. They'd changed over their computer system and a bunch of us had our payments made, but not recorded, so the computers spit out the late notices. They had fixed the problem, but weren't able to stop all the notices.

ANYWAY, I called the bank, ready to be told it was something similar. Except this time, it wasn't them. It was us. Our account balance was below the amount our house payment was (basically, we were about $300 short for that day of the month). When the bank lady told me what the balance was on the day of payment, I realized what happened. I thanked her for her time, told her I'd be in the next day to straighten it out.

I hung up the phone and turned to the Disabled Guy- who was standing there, ready to back me up with indignant sighs and proclamations that the bank lady wouldn't have heard.

Me: "Remember when we helped Christine with that rent thing?" (long story short- our daughter is moving into her own apartment this school year and miscalculated her move-in date and needed to pay rent for August instead of September. We helped her out till her paychecks become regular).

DG: "Yeah."

Me: "Did you deposit the check to cover it?"

DG: "No. You told me not to."

Me: "I never told you not to. I told you TO deposit it."

Then he recited this to me- which was almost word-for-word correct: "You said since we were giving her the money from this bank, I didn't need to write her a check from my other bank."

Me: "Yes. I DID say that. Because she needed a cashier's check to pay the rent, since she's mailing it. So I told you on payday I'd give her that check [almost $300 for her share- she has roommates] and then you could deposit the $300 in OUR account so she wouldn't be late on her rent having to wait for the check to clear."

He opened his mouth to debate then stopped. I could see the wheels turning in his head and it clicked. He only listened to half of what I had told him. He does that a lot. Now that we have that house payment thing settled (and totally his fault for not listening to ALL MY WORDS), we went on with our day- me finishing up the last of my ren faire photos for last week, him playing with his model train.

Around 6 PM, he came out of the basement and as he walked past me, he asked what we were having for dinner. I replied we were having frozen pizza. That's what we'd talked about the night before.

DG: "No, we didn't. We had hot dogs last night."

Me: "I know. We talked about it because Christine's work hours are fucked up. We decided to have hot dogs last night and frozen pizza tonight because she could make her own when she got home." (she's working on a movie set about an hour away- great experience, low pay).

DG: "I thought the frozen pizza was for Friday [tomorrow]."

Me: "She's not even going to be home for dinner tomorrow." (Fridays, she goes out to the faire and stays on site because her call time is so early in the AM).

DG: "But the pizza was for tomorrow."

Me: "No, we talked about it..."

Then, those wheels in his head clicked again.

ALL MY WORDS.

I exclaimed: "OH MY GOD!" at him, much like I did when I got off the phone with the bank when I realized it was his mistake and we weren't actually missing a random $300.

He said: "Man, now I want some Kool-aid."

Me: "What the hell does that have to do with anything?"

DG: "OH YEAH!"

Me: "Uh.... what?"

DG: "You keep saying it- OH YEAH! And now I want some Kool-aid."

Me: "I said OH MY GOD, not OH YEAH."

DG: "Are you sure?"

Me: "Yes. I'm positive. I'm positive you're a lunatic."

DG: "OH YEAH!"

ALL MY WORDS... 

Now, on a much lighter note...

And, as I mentioned many, many times before, I go to ren faires. Last year, I met this guy and his wife at Bristol. He looked familiar to me, but I thought it was because I had met him previously at faire. Well, sort of... he's familiar because he's been on TV. That's Mike Trykoski from the TV show called "Wrecked". It was a show about the O'Hare Towing company and the many "adventures" they had on the job. And the Disabled Guy loved that show.

The day I took this photo, he was wearing a kilt. Now he dresses like a pirate- tricorn hat and all. His wife- Mary- dresses in long, flowing, comfortable dresses. They come to faire frequently and are season members of the Friends of Faire (which, as you recall, the Disabled Guy built benches for).

Mike Trykoski and his wife, Mary

So, once, when I saw them, Mike told me that he had a T-shirt and hat to give to the Disabled Guy. Since they only come to faire every couple weeks (as his job allows), we didn't see each other for very long... anyway, he gave me the shirt and hat last week. I didn't tell the Disabled Guy about it- the hat and shirt, that is- I told him who I met the day I met them. Anyway, when I gave them to him, he didn't believe me. I had to remind him of how I knew Mike and Mary.

Then I took a terrible cell phone photo of him wearing them so I could show them next time I saw them at faire.


Then I took one with the flash and discovered the grey stripes on the hat are reflective.




Friday, June 13, 2014

Some people have asked, so I'm sharing this-

I was interrupted a few times while typing this and I'm two hours past my nightly pain meds, so please, forgive any grammar, punctuation, or whatever mistakes.

Lately, I've been asked what we think of the recent issues with the VA that have been in the news. For the most part, those issues don't have an effect on us because he's already "in the system". The biggest issues right now seem to be with incoming vets.

But, I will say this- it is nothing new. When Jerry had his stroke, he was out of the Army for six months and ten days. That "ten days" took more than two years of me filling out forms and writing letters to congressmen/senators (by the way- never heard anything back from any congressman/senators we had in Georgia- where we lived- or in Wisconsin- where we ended up living), and going to the random appointments. We once had to drive two hours to Charleston, South Carolina from where we lived in Georgia for a doctor's appointment. It was scheduled at 8 AM on a Saturday. So, I had to get up, get three kids (aged 6 and under) and the disabled spouse all ready and then load them up in our vehicle and drive into an unfamiliar area with just a truck driver's atlas as a guide (this was back in 1995).

Once there, we were put in a waiting room with about twenty others. After waiting about an hour, we were then told to follow them (two nurses and a man in golf clothes who turned out to be the doctor. (by "golf clothes" I mean a polo shirt with golf balls and clubs all over it and khaki trousers. He had sunglasses on his head as well). I told them that Jerry couldn't walk fast, he'd had a stroke. But that didn't stop them from charging down the hall at a speed even a child had trouble keeping up with. Luckily, some of the other vets created a "chain" in waiting at any turned corners so we wouldn't get lost along the way to another waiting room.

When we were finally taken in to the exam room, it wasn't even an actual examination room. It was an office without any medical equipment.  During this "exam" to determine if Jerry was indeed disabled, the doctor asked him his name. He answered. Asked which branch of the service he was in and he answered. Then he pointed at the phone on the desk. Jerry answered. And it went on like this- the guy pointing at random shit around the office and sometimes throwing in questions like "Who is the president of the United States?". Jerry called a computer monitor a TV and he called the doctor's fancy wristwatch a clock. He called a few other things by an alternate name that sort of meant what they were, but you know... stroke victim.

And that was it. A few weeks later, we got a letter saying that he didn't qualify for anything the VA had to offer. The gist of that letter was: "Due to your time in the service, more specifically your time in the Operation Desert Shield and Desert Storm, you qualify to receive benefits from the Veterans Administration." And the next paragraph said: "Unfortunately, we have no benefits to offer you at this time." There was some other official stuff, "articles" and such (actions in the military are called "articles", like "Article 15" is an official reprimand. A movie that came out in 1992 called "Article 99" was referencing letters like this. Basically: "Congratulations! You qualify for benefits! Sorry, we don't have anything to give you!" But that's a pretty good movie- a little ridiculous at times, but hey, Hollywood, right?).

Some time later, we lost our home in Georgia and moved up here where my parents lived because my parents were helping us. I always tell people that we came to where the help was. My dad took us to see the VA rep in town (if you have a VA rep- and you most likely do- go to them, they know things we don't). I handed the VA rep the thick, heavy manila folder I kept with copies of everything I'd ever sent to the VA and any politicians I'd written to (snail mail, because who had a computer back then?). And I showed him the few things we'd been sent by the VA. He didn't even LOOK at it. He sort of flipped through and sighed. I told him about the trip to Charleston and showed him the "Article 99" letter.

The VA rep told me: "Stop sending them stuff. They have more than enough information."

Two weeks later, we had a letter saying Jerry had an appointment at the VA in Madison. That's about an hour away. My dad was in the system and he had me go with him on one of his appointments, so I could know the way there and where to go once we were inside. THAT appointment was an actual medical exam. They did a complete physical, made copies and kept the info from all the medical records we'd brought with us. They spoke with both of us, made assessments and told us they would contact us within six weeks.

And that was it. After that, we were "in the system". He had regular appointments. He had his prescriptions covered and all medical for him was taken care of. He was declared "50% disabled" at first. Then 75% and so on and so on, till he reached 90% disabled. And they stalled there. At 90% disabled, he got nearly everything in the way of benefits. Except for medical coverage for the family. And we had three little kids. I ended up having to call the main VA number and I managed to reach an extremely helpful person. It took a few more weeks, but we finally had medical coverage and I was allowed to fill out claims for any medical expenses going back for two years. (not everything got approved and it didn't change any of the bills that had already gone to collection agencies- hey, I was pulling in a mean $5.50 an hour back then).

So, from the time he had the stroke, it took me about six months to even find out that we could even apply- oh, I'd forgotten to mention that... I called the VA office in Savannah, Georgia and a woman told me: "Don't even bother. He won't get approved. Save yourself the heartbreak." I had a routine appointment with the Social Security Disability office and their person suggested we make contact with the VA. I told him what I'd been told over the phone and he was shocked. He made one call for me and got the wheels turning (as in- the first set of forms were mailed to us).

So- from the time I first filled out paperwork to the very first appointment, it was almost six months. It was another two-ish years before he was declared 90% disabled and another six months after that before he got 100% service-connected status. I'll be generous. Three years. It took almost a year to get "in the system" and another two before he was give the Golden Goose Egg of "100% Service-connected Disabled" status.

I did most of this on my own (there were no charities- at least none with TV commercials and junk mail like now). I filled out paperwork, paid to get copies made at the post office, I wrote letters (literal handwritten letters) to Washington DC. Those forms I filled out were repetitive. I still have most of that information memorized from writing it over and over and over. I had to get a certified copy of his DD-214 (discharge papers) which meant I had to go to the courthouse in downtown Savannah, pay for parking, pay the fee for the certification, and it was for no reason. Nobody needs a "certified copy" of DD-214s. (apparently). By the way, during this time, I was working third shift as a security guard. I had Mondays and Tuesdays off because that way I could schedule any of his appointments for those days and not miss my precious $5.50 an hour paycheck.

Anyway... three years total, but it took a year to get "in the system". And that bullshit appointment in Charleston where the doctor would have rather been golfing? That was over six months.

At each victory, we were completely thrilled. We never expected to get anything more, so we were happy with every little bit we did get.

So, the VA has always had "issues". But, I can say that the care he has gotten at the VA hospital in Madison has been very good care. My dad had good care through them as well. I also go to the VA in Madison because they have the spouse program for the spouses of 100% service-connected disabled veterans (but not for the kids, it was just for spouses- but we did have good medical insurance-like coverage for the kids with a 75/25 cost-share thing).

But, now that you've read the whole thing, I'm going to share these with you...

The other day, I explained to the Disabled Guy that I have a huge head and none of my hats would fit on him. So he let me take this photo. That's my Wonder Woman crush cap (which is in my Blogger profile photo).

















Today, I asked him to help me with my 365 for Flickr. The theme was "Twisted Flickr" and I wanted him to "be creepy"... it resulted in cackle-laughing on my part and laugh-snorting on his. And this is today's 365 photo.






Sunday, June 8, 2014

A Cautionary Tale of "What the fuck were you thinking?!"

I'm not sure how much I swear on this blog. But I swear a lot in general and especially on my fibro blog. Today's post may include a lot of swearing. And I'm not sure how funny this will be. Because today was a long day.

Last night, my body had what I call "Insomnia Lite". My pain overtakes my pain meds and I can't sleep. I usually give my body a couple hours to settle in, just in case I do actually fall to sleep. But I usually end up getting out of bed and then whining in a blog post like I did last night. I finally got to bed around 4 AM. And, in getting to bed around 4 AM, I slept till 930 AM. After I showered and blowdried my hair, the Disabled Guy came into the room.

And he said: "I think I might be trying to have another seizure."

Me: "What makes you think that?"

Without looking at me, he said: "Because, I get this... this feeling... like jumping... in my gut. And it goes to my throat. It gets tight and then I can't control my motions."

Me: "When did you last not be able to control your motions?" (by the way, I wasn't dressed yet. I was standing there in my underwear and slippers).

DG: "Not the thing. I can't control my mo-motions. Like crying. I just cry for no reason and it won't go away." And he then proceeded to cry for a few minutes.

So, while I put my clothes on and tried to act like I wasn't freaking out, I asked him the usual stroke questions. "Do you feel weaker than normal on one side? Can you see with both eyes? What's your full name? What's my full name? What state do we live in?"

After each answer, he would repeat the thing about his emotions and his "jumpy feeling" in his gut.

After I was sure he wasn't having another stroke, I asked about his seizures. I've seen him have two full-blown seizures in our lifetime. And one of them he had that "aura" thing that some get. It was obvious then that something was wrong. But this time, he acted normal, except for the crying.

I told him we were going to DVR his race and go to the ER. He didn't disagree, so I knew he was scared. After getting my shoes on and taking the dogs out, I asked him if he wanted to go to the local ER or drive the hour to the VA hospital. He said he was good to go to the VA hospital. I told him that if he had a seizure while I was driving, I'd punch him in the face. He didn't disagree with that, either.

So... I had to stop and get gas in the truck and that's when I found out something. About six months ago, he decided he didn't like taking so many pills, so he cut his seizure meds dose by half. Instead of taking two tablets at night, he started taking one tablet. I wanted to punch him in the face right then and there.

HE DECIDED TO CHANGE THE DOSE OF HIS OWN SEIZURE MEDICATION.

The last time he was off the seizure meds was in 1997 when the VA hospital saw fit to wean him off Dilantin, "to see what would happen". About six months later, he had a full-out seizure, complete with the pre-seizure aura, and full-body flailing, including biting a huge gash into his own tongue.

At the VA hospital's ER, they asked him the usual questions ("Why are you here? No, I mean here at the hospital, not man's existence in the universe.") and he started to downplay it, like he does. (he once slipped on the ice and injured some ribs. When the ER doctor asked him how the pain was, he downplayed it, saying it wasn't too bad. I stopped him from talking, imitated a movie quote that I knew would make him laugh. The doctor told me it was a clever move and of course, he was able to see how much pain he was actually in). I interrupted his side-stepping and told the nurse what happened in our room where I was not yet dressed. I left out the "not yet dressed" part because I didn't think it was important to her.

She then started in on the psych eval to make sure he wasn't suicidal or hoarding his pills to attempt suicide. He hasn't been through that before. And I let her do it. He got flustered trying to explain himself and finally looked at me and motioned for me to take over (I usually take over without him asking, if I see him getting increasingly frustrated). After a few more questions, she was satisfied he was just a stubborn asshole and not a suicidal asshole.

When the doctor came in about ten minutes later, he did the same thing. This time, he looked at me, hoping I'd take over and I said: "Nope. You dug yourself a hole, you climb out of it." He managed to get through it and assured the doctor he was a stubborn asshole and not a suicidal asshole.

So, the Disabled Guy learned a few things. One- he is not a doctor or a pharmacist. Two- seizures can kill you (he never believed me when I told him that myself). Three- withdrawals from seizure medication can also kill you. Four- if you're a stubborn asshole who takes medications that are also a treatment for bipolar disorder, you might want to listen to your goddamn doctor and take your fucking meds on schedule.

He promised that he wouldn't do it ever again. He assured the doctor and nurse that he was just tired of taking so many pills. They were satisfied with his assessments (both physical and mental) and sent us home. He's taking his full dose of medication, of course. But they suggested he not handle his power tools in the shop for a few days, to make sure he's got his full sense back while the medication gets back up to the right dose. The doctor told him that he needed to discuss all things with his primary doctor. "If you want to change something, that's who can help you. You should never change things on your own." He's going to submit the report to the primary doctor, so we might have to go back next week for an appointment with him. But let me repeat something:

YOU SHOULD NEVER CHANGE YOUR MEDICATION DOSAGE ON YOUR OWN.

He takes lamotrigine, which, according to Google, is also used (in different dosages) to treat bipolar disorder. So, he was slowly putting himself through withdrawals, without the supervision of his doctor.

So yeah... I've had a very long day. I'm exhausted. While at the ER, he was weepy and a little scared. (as he SHOULD be, for freaking me out like that). He's fine now- watching his DVR'd NASCAR race.

This is the Disabled Guy, in the exam room, between the doctor's visit and the discharge orders.


Thursday, May 22, 2014

The Janesville Renaissance Faire and the Disabled Guy

Remember how the Disabled Guy made a treasure chest for my sea captains? Well, last weekend, I was able to give them the treasure chest. They were properly impressed, they couldn't stop raving about it, all the blocks fit absolutely perfectly, and there was room on top of the blocks because of the shape of the lid.

And, they used it- as a box to tote the blocks, as a table, and as a bench. They loved it.

And then it broke. Not badly, just some nails came out and DG blamed himself for not "making it properly". So, he came out to the Janesville Faire with me on Sunday. He didn't "go" to faire, he merely came out with some tools to fix the treasure chest properly. The faire let him set up in the "green room" (where the cast and crew could go to take breaks and eat lunch and so on), so he got to meet a lot of people. I introduced him to as many people as I could and a ton more made their way into meet him on their own (he was there about two hours). And, I accomplished one of my goals- I introduced the Disabled Guy to Jane the Phoole. AND I HAVE A PHOTO OF IT!!

I don't remember what she said, but he was trying not to laugh.

Jane the Phoole and The Disabled Guy

Since I wasn't in the room with him the whole time (I did have to go out and take a few photos of the faire, of course), I have no idea how many people actually greeted him. I do know some of them waited till I was there to have me introduce them, but a lot just said "good morning" or "hi" to him. And everyone was very glad to meet him.

When he was done fixing the treasure chest, I told him he had to pose for a couple photos, then I'd let him go. He was a very good sport about it, because he hates to have his photo taken. But, I managed to get two shots with the sea captains and the treasure chest.

I had them all cross their arms and look "stern" because that's how DG poses for photos when he doesn't want his paralyzed side to be obvious.

The Sea Captains and the Disabled Guy

Then I told the sea captains to pose however they wanted, because I knew DG wouldn't move. And he didn't.

The Sea Captains and the Disabled Guy


So, I finally got the Disabled Guy TO the faire on a faire day (as opposed to pre-season at Bristol). I introduced him to as many of my people as I could (he can't remember all of them) and despite wanting to take photos of him with everyone, I didn't. But hey, the photos I got were awesome.

Oh, and the funniest part (at least to me) was as we were walking out to this grassy area- with Frobisher and Hawkyns carrying the chest- I pointed at the other Towers game box (which was set up with the Guild of St. George). I said: "That's the original box, the 'coffin' I said you could make."  The Disabled Guy looked at it and made a scoff-sound with his laugh and said: "Yeah, right."

Because of course he'd never make anything so lame. Sea captains need a treasure chest.




Wednesday, March 26, 2014

The Disabled Guy hates needles, another Textually Speaking...

I gotta say, these text convos are way easier to share now that I have a phone that does screen captures. I used to have to type them all up manually...

Anyway...

DG hates needles. Which makes the fact he has a monthly blood check even funnier to me. His fear of needles is so bad that he looks away when it happens in a movie. We all do that with some things- for me its anyone causing an injury to themselves. Especially a knee/foot injury, because I've had so many issues with my own that I KNOW how bad it really hurts.

Now, he doesn't faint with this fear of needles. He just can't watch the action. (I can, if they let me. And I'd photograph it, if they'd let me). His fear is that while they're jamming the needles into the flesh, that the needle will break off just under the skin and you'll die before they can stop it. Which is ridiculous and he knows how ridiculous it is- but, phobias make no sense.

This came up because a month ago, I had a steroid shot in my foot for a very long-term plantar faciitis issue. (also known as "bone spurs" and "Pain so bad it feels like a burning hot railroad spike is being hammered into my heel").
Here's a link to my blog about it- with pictures! Well, that shot didn't take. It started out okay, but within a week, I was back to the original level of pain. So yesterday, I had another appointment. My options were limited to: "Get another shot and hope for the best" or "get surgery".

Normally, I'd jump on that surgical bandwagon with the speed of the Flash. Anything to rid myself of this pain. However, one needs at least six weeks to recover (three weeks in a cast) and I don't have that kind of time. In about five weeks, I'm going to start my busy time. The funny thing is- I have about six weeks between all that and the opening of Bristol. But the problem is that I also have fibromyalgia and there is no way to predict how long a delay I'll get from that... but I digress... Today, I sent a text to DG and told him what the doctor told me while I had the needle in my foot.


What he's saying is that he walked into his room, saw a new message 
on his phone and was shocked and grossed out to read what I sent. 














Sunday, March 23, 2014

Well, that escalated quickly- Textually Speaking.

You all remember that the Disabled Guy built a fancy treasure chest for my sea captains, right? If not, here's the link to that post. And you all know that I do that whole photography thing... And in that, I do a 365days self-portrait project. I'm on my fifth year. And this is today's 365 (Day 38). This is just a lighting trick. My flash is on a remote trigger, inside the box, and I used my camera's remote to take the photo... and the flash fires when the camera does- giving us this effect. (basically, there's a camera flash inside the box). But that's not important...

38 of 365 part 5: What's in the box!?


The important part is that I sent that photo in a text to DG and this is our subsequent conversation...











Sunday, March 16, 2014

A new look... and something not about the Disabled Guy

I've been meaning to update this blog's template and overall look, but I've also been procrastinating myself into oblivion because changing things seemed too much like work. Last night, I was stuck awake with my fibro's idea of insomnia ("diet insomnia", if you will). I changed that one over and let me say, the interface has changed a lot since I first did this. It was easy. The hardest part was updating that banner image. The new photo of the Disabled Guy is from this photo I did for my dad- so it's from October of 2012.

Back when I first set up my blogs, I did the layout and colors in a way so my mom could read them. She preferred the darker background and lighter fonts, so that's how I did it. And, well... its been just over two years since she passed away, four months since we lost Dad.

I know this blog is for my conversations with the Disabled Guy, but I've been wanting to get this out for a few weeks now. I miss my parents every single day. Our lives are never going to be as good as they were when my parents were around. They were good people, good parents, and they are going to be missed by me till the day I die. My day-to-day life has been ripped apart.

But one thing I'm relieved about- and this came to me a few weeks ago- is that I'm glad my dad was active and living his life when he passed away. He went suddenly and he still had plans. But he didn't get sick and linger. Mom got sick and in the last year of her life, she hated "being a burden" to us. She wasn't a burden, but she felt like one. And she hated it. So, I'm glad my dad was able to keep doing what they wanted to do. He got home from a trip on that Saturday and he passed away on Monday- after winterizing his RV for the year.

Sorry to bring you down... if it helps, I was crying through those previous two paragraphs and probably missed some grammar mistakes.